The Global Face of Eosinophilic Esophagitis: Advocacy and Research Groups

Abstract

Although eosinophilic esophagitis (EoE) has been described in the literature for a substantial period, its recognition as a disease entity on the global stage is still relatively new. It has become a major diagnosis of consideration by medical providers when both adult and pediatric patients present with dysphagia, food impaction, and gastroesophageal reflux-like symptoms. In addition to the clinical work of specialists such as allergy-immunologists and gastroenterologists, the evolution of research organizations and advocacy groups focused on EoE have greatly assisted in bringing attention to, and raising awareness about, this disease. As a result of their efforts, diagnosis and treatment guidelines have been developed, and medical providers now have a specific ICD code for EoE. This represents a new model for the interaction of patients and medical provider, where patients not only advocate for their disorder, but also drive physician education and a patient-centered research agenda and its funding. It should be noted, though, that these organizations and advocacy groups are mainly located in North America and Europe, and as a result, EoE has largely been associated with the Caucasian demographic. However, it has been described in Asia, the Middle East, Latin America, and Africa. Physicians from these areas have increased awareness and understanding in the medical and research communities in their countries through case reports and the establishment and analysis of potential patient cohorts. At this time, the prevalence of EoE in these regions is comparably lower, but this may be due to less recognition and understanding of EoE, as well as medical efforts being directed towards more ubiquitous disease processes, such as infectious diseases. With the support and ongoing work of researchers, patients, and their family members, understanding and recognition of EoE as a clinically significant disease entity will continue to grow.

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